Oh where are you
My precious love
That I may draw
Strength from
Your heart
That I might
Feel your power
And tuck me safely
Under your arm
And shelter me
From the evil
In the world
Where are you
My precious love
Can’t you see
It in my eyes
Can’t you hear
My heart beating
Here, look in
My direction
For I am
Waiting for you
Terry Shepherd
05/18/2013
A heart being used as a symbol of love.
Do not suck
The life out of
My loins for
I will crumble
In front of your
Feet, tears
Scrambling to
Find a place to hide
My heart laying in
Pieces for the
eyes to see
Please don’t go
Stay near my side
Love me forever
Say you will never leave.
Terry Shepherd
04/30/2013
I can’t help but write again
As my heart is being squeezed
Tears won’t stop flowing
I loved you so long ago
When I could see you all the time
And now the barrier keeps us apart
But my love for you has never left my heart
I can almost feel God reaching down to you
I can feel his warmth entering the room
As he is calling your name and I see that
You have answered him back
You may be leaving
But your memories will forever
Remain in my heart
I loved you then
As much as I love you now.
Have a safe journey
Tell God hello from me
I wanted to say but one more time
While you are still here and can hear
I loved you then and I still love you now
Here’s a hug and a kiss A.W.
Terry Shepherd
03/15/2013
Illustration of the Parkinson disease by Sir William Richard Gowers from A Manual of Diseases of the Nervous System in 1886 showing the characteristic posture of PD patients (Photo credit: Wikipedia)
When was the last time you felt really, truly lonely?
Last night, actually I felt lonely, right as I was lying down to go to sleep. I try so hard to not look at myself as a big pity party with only entertaining one guest, myself, and I am not even sure if I qualify for the word pity.
Caring for my brother, who has been in my care almost five years. This will be five years in January 2013. Dealing with mentally impairment, heart attacks and angina, and now, Parkinson’s Disease. Life becomes over whelming most of the time.
It is described as a little snow ball rolling down the hills until it becomes so large, the city can see it if they look in this direction. It started out, that I was able to still work while Al, my brother was ill. He worked also, at a linen company, sorting mops. It was a nasty job, just plain nasty, and in my eyes, it was the bottom of the pit job, and he never climbed out of it, but with his mentality, he saw it as a paycheck and nothing more, nothing less. He did this for nine years, with very little pay increase.
When January rolled around, from which we had buried our father only three weeks prior, Al had a heart attack. I was still able to work a little while longer. I was and am still considered a professional caregiver, and I was at the time, caring for an elderly couple on the weekends as a live in. Al was recovering nicely, but when it came time to go back to work, he could not pull his weight in work.
The company was so good to him, even though he made little money or given nice raises. They cared about him. They let him return three times, but then they called me into the office, and with tears in their eyes, they let me know they had to let him go, because although they liked him very much, he could not do even fifty percent of the quota.
This changed things. I retired from my job and started caring for Al. With no money coming in for him, and no job, and not really having any idea how to run a house hold, it took my entire waking hours to make everything work.
From the heart attack came excessive mental baggage of not understanding why he could not do the things he used to do, then more heart problems, angina. We dealt with this for some time and even had to move, because walking stairs to his bedroom was too much for him.
Now we have been dealing with the progressive Parkinson’s for two years, and for him, it has sped very fast from the beginning, now leaving him in the fifth stage. You deal with many issues with Parkinson’. Freezing up of legs,tremors, choking, tears, unable to control urine, constipation, scooters, walkers, canes, many doctor’s appointments with different specialists. The emotional part is probably the worst of the disease. Hearing him constantly talk about wanting to die, why isn’t God letting him die, hearing he is sick and the disease is destroying him.
A part of his brain has shut down. The part that lets you see joy and happiness, so mostly Al sees only himself, and his pain, which is a constant in his life. I can sit here and listen, help, watch, guide, explain, but at the end of the day, Parkinson’s will win this game, and Al and I will lose.
So at the end of the day when I have him safely tucked in bed, and he is nice and dry, and his television is turned on, I wait for his tremors to settle down from his night-time medications, and by the time he is falling asleep, it is around three am, and from midnite until three am, I have the open opportunity to lie in bed awake and listening, wishing I was not walking through this journey alone, and I get very lonely
The world is full of mysteries and yet our minds are headed in the directions of what we know. You live the best way you know how, and you use what you have learned in your life and past experiences to make your decisions today.
Lately, on a lot of different sites I have visited, the topic of fear has come up, and as I have sat here reading others blogs, I am thankful for where I am placed on this earth, and for the opportunity of caring for my brother.
I have talked surface talk, about my father passing away five years ago. After this death, my life truly did change forever. Not only did I miss my hero so much, I had also been finalized a divorce from my husband,a few months prior to dad’s death, and I was experimenting living the single life.
My brother had his heart attack, and even during these times, there was a sense of aloofness from within my soul. I was so thankful for my daughter, who at this time still lived close by, for she was a great comfort, and her husband, was a proud, tall man who would take me and hide me under his wing, during the moments others were attacking me. I had a close friend also, who was always standing next to me in spirit, and this helped me to still stand through all of this.
It is crazy, just no other word, but plain crazy, what the words WILL and MONEY can do to a person. Family that I had, friends that I had, all of a sudden changed. No one was there to guide me, but the attorney. He would inform me of what I needed to do, or sign. My siblings would be involved with each step of making the formalization of the estate to be closed.
The Will was open for a year and a half, and I basically, walked through this first-time experience alone, trying to follow the rules, the laws, and taking care of my brother after his heart attack, and wondering about my own self.
Going from living with an emotional abuser, and then to living alone and feeling that sense of freedom, then back to living with someone, but this time my brother, was almost too much for me to handle. I was so thankful for my children and to God for carrying me through those awful months.
Wills are not always about happy times and getting monies or personal belongings. Wills can express in detail what the person who had it drawn up, is truly about. The deepest, and most secret wishes come out like the ashes from a volcano, hitting you in the face, and stinging at the same time, forcing decisions to be made and followed through, that I would rather have not had to do.
When you have lost the hero of your life, receiving five dollars or a million dollars, makes no difference at that time. When you are told you have to sell items to satisfy the law, it is not easy to see part of your memories of your life be handed to strangers.
I did as I was instructed, and mourned my father’s loss,in the spare time I had. I did end up moving in with my brother, as time expressed that he would not be able to take care of himself, and I still continued to work, and everything seemed alright on the surface, but deep down, in some, feelings were churning, and hurtful words came out, and family and friends who I had been involved my entire life with, were eventually gone, and the only way i have today of knowing these people were in my life is through my own memories.
I had no intentions at that time in my life of caring for my brother on a permanent basis. I can remember back then when he had the heart attack, I knew he would never be the same again in functioning, but in ways he was the same person as before the heart attack, he just needed a routine. I had looked into apartment living for him, in locations where other disabled adults lived, but I was shocked each time we paid a visit at the huge prices they wanted to charge someone who had little or no income, and had limited abilities to function in the daily world. I also would notice that my brother would look at me with sad eyes, and after time went by, I was able to see someone other than me who had suffered a loss besides myself. My brother had lost his routine. His comfort zone. Although dad was not the best to him, he was used to it, and he knew how to hide when dad was around. Work that he was accustomed to going to daily, was no longer there. In ways, I am sure today, that Al suffered as much as me or maybe more, because he was totally dependent on others for his care.
It was then that I decided to give him the only stability I could offer him, and this was myself. A sibling, not a stranger, to walk the unknown paths of our future. We did this together, with the approval of our half-sister, and the courts. I chose to do what was right for Al, and gave up my work job, and learned to trust God for our needs.
The hurtful things done and the stinging words, I have done my best to put away, but with Al’s living more in the past each day, I am forced to remember things better left un-thought. I try to do what is right, and I work hard to live a respectable and calm life, but every once in a while the past comes charging back at me, and this in turns makes me want to stay hidden from the world.
I came to start writing, because although my days are filled with Al, and doctor appointments, and paying bills, and the regular things we do in our lives, I still felt this huge hole in my life. Writing was a way for me to express my true feelings. It was like having so many friends that were understanding. There was no judging, and no rude comments, it was a neutral world, where I was able to make friends slowly through opening up my heart.
The past came back once again as a mystery to me last night. As I was reading my emails, I came across one that made my stomach hurt, and caused me to be on guard once again for Al and myself. A comment was made directly at me, that was too close to what words had been spoken those five years ago. I knew in an instant, this comment that was made, was from someone who knew me well, and I suspect he or she was from my past also.
It isn’t the fact that I can not care for myself or for Al. I can, and I have to admit, that I think Al is much more happy here at home than a nursing home, and when the time comes, if it does for him to move in to a home, I will know that he did more shopping and dining out, and experiencing new things in life,and he knew I listened and cared about what he said, , so for this I am grateful to have been able to give this to him.
What bothers me is now, is that I am in the mindset of five years ago, wondering why people who were there for me, and in agreement with me, are no longer around, and have never lifted one finger for support or help, have decided to invade my life once again, with just one sentence.
I am who God hath made, and I will stay under the wing of him. The Lord will guide me through each of my steps here on this earth, not letting me trip over myself. He will touch my heart and let me know that I am not alone. He is my shield against all warriors, and he hath great powers to destroy thine enemies. For God loves me and Al. Through God’s love, I can do anything, for he is the power that I love, that I have chosen to receive, and in his arms we shall be safe. Amen.
I turn around to see the tears
And ask why are they there
He tells me he is ready to go
That he no longer fears.
He speaks of mom and all his pain
And says he wants it gone
He says his life is of no use here
And has nothing here to gain.
My heart has cracked
As I see his tears fall
And hear the sadness in his voice
I must let him go, and not look back.
Some do not understand the ways
Of a human who wishes to die
We stand away and look from afar
And hope for him better days.
For those who know their time is near
There are no better days here
They have recognized life as gloom and pain
And want to be with the ones they hold so dear.
I wish for him with all of my heart
For his smiles to reappear
And I know without a second thought
That his smiles will return, when he does part.
I love my brother with all that I can be
I would not have missed a thing
The memories that I have buried with in
Are in the box, and only I hold the key.
I don’t know if you are right
About your time to go
But I will accept that in dreams or not
You are ready to see the light.
Terry Shepherd
July 07,2012
Kellie has given me the opportunity to write this exercise, and I want to thank her for opening my mind.
When it comes to empathy, I feel like I live it without realizing it. Taking care of others is a very rewarding job. You connect with their feelings, you gain the understanding of how they feel and you see what is important to them at this time of their life.
Taking care of my brother, Al, is probably my best test in having empathy. Al is mentally challenged, has heart problems, and also is diagnosed and fighting with Parkinson’s.
I have to be able to climb out of my skin and enter my brother’s soul. It reminds me of the scene in the movie Ghost, where you actually see a film, ghost-type entering and exiting Whoopie Goldberg’s body.
I plan doctor’s appointments, take my brother to all of the appointments, talk with each doctor, and make changes with medications and goals, in order to keep Al feeling his best.
I am constantly thinking of ways to help his day have moments of joy and laughter. We go shopping, that includes only his interests. We go to eat at restaurants, trying to go where he enjoys going.
I clean the house, do his laundry, change his bed sheets, cook his meals, pay his bills, all parts of our daily life skills are practiced here.
Then there are the times in between, when I have to enter his mind, his soul, and his pains. I have to stop my own mental thinking, and imagine what he is going through. Understanding where the tears are stemming from. Imagine how his pain feels. Feel his humility when his body freezes, and help him to walk once again. I have to understand how it feels to try to use a fork or a spoon, to eat, something we have done our entire lives, but now, it becomes a struggle to keep food on the utensils.
Empathy is comprehending that it is alright for him to curse or get mad when food falls to the floor, and he realizes it. When Al wet his pants the other day, I had to instantly transfer myself into his mind, and feel what he felt when he was forced to walk out of the restaurant bathroom and show me his wet pants.
When Al yells at the newscasters on the TV for showing the weather more than once. He calls them idiots, or stupid. He doesn’t understand the aspect of how they show it twice so that more audiences can catch the weather. His mind is simplified, and I need to get inside to understand this and to be able to say something to him, that brings him to the realization, that I get what he is saying.
Dealing with all of these illnesses that are in one body, is a challenge. If this were a job being paid by an employer, I would not be paid too many times, because it is difficult and tests every part of our being. I think this type of work tests the nerves and can cause much stress.
You have to have a heart, compassion and empathy to enter this type of work. It takes transferring your thoughts into their thoughts, the skill of listening, and the passion for understanding. For me, I would not trade it for the highest paying job in the world, and I would not miss out on each day my brother lives. I want him to know that I love him, that I am here for him and that I do my best at understanding his views in life.
Lord Howe Island snorkeling – Double headed wrasse clown fish and others (Photo credit: Percita)
Hi bloggers. I am writing to each of you that respond to me, all in one blog reading.
I don’t feel well today. I don’t normally make it an plan of action to write this many blogs in so few hours, but I need your friendship at this moment.
Good news. I have hired a respite caregiver. Her name is Shannon. I fell in love with Shannon as soon as she arrived here. She went straight to Al’s room and interacted with him, while he showed her all of his coca cola items. I could hear her making a fuss over each one as if she had never seen anything like it in her life. She left him to talk to me for a while. She said she was going through the ads,but before she started reading them, she prayed, that God would show and guide her to someone who needed her. The way she feels about life, and her complete attitude had won me over. Al liked her also, a good thing. She is going to be able to let me out of here once a week, and once a month I get a whole day, like eight hours.
The heating and air man came today because of an issue I was having. Not much wrong, but still the bill was pricey, as everything in the world is. Next my son called me and told me the price of the shingles for my roof was double what I was quoted.
After we hung up I called the store and they had only quoted me for half a roof. They forgot to times it by two, so my mind went into shock, as I knew I had no choice, as the old roof was torn off yesterday. He has left to pick up the shingles and other supplies, and Al is taking his nap, so the only thing I hear is silence.
I should be grateful, but I am not. I have this huge butterfly nest in my stomach, and my heart is hurting terribly. Not like a heart attack, but like a I am alone, and I am scared, and I am fidgety. The pain in my heart is from all the stress that has been building up for months. Agitated that I can find no comfort in anyone around me. irritated that it has taken so long to find a caregiver that actually wants to help me. Battling with my own edges of depression, fighting hard to keep my sanity. Leaning on God for anything I can grab a hold of. I feel like I am going to snap. My eyes feel like they are going to flood, but nothing happens. I feel helpless, not hopeless, but helpless. My age and diabetic issues keep me going backwards, forcing me into reality that I can no longer do the things I once used to do. That with age comes weakness of the body. I hate asking for anything in life.
I feel guilty because I feel bad. I have just found the perfect caregiver, and I know God has put the two of us together, but I still feel sick.
I don’t understand why I am the way I am. Trust in the Lord. Give him all of your worries, do not lean on anyone here on earth. God will take care of me and everything that I need he will be here for me. So why do I want to just lie down and cry my eyes out. Why is my heart acting like my brother is already gone, when he is sleeping in his own bed.
Is something catching up with me? Has something been following me for sometime and I am just now realizing it?
I went to my friend Aina’s blog, link above here, and I instantly felt more pain, but I forced myself to listen to her song she had on there. She was telling me about her two-hour walk, and the restaurant that she, herself, had picked out. She chose her own meal, and listened to the live band play. As I listened to the songs, and followed the words in them, utter loneliness crept inside my soul and heart. I wanted this. I wanted this so bad, I could almost taste it. I wanted to be around those people, listen to that music, eat my dinner with calmness.
I am where I am because this is where God hath placed me. I am doing the Lord’s work as he as asked me. Why can’t I be content. I need to stop! I need to think of others over myself. I have a job to do and a soul to look after. I am disgusted that I can possibly want more.
It has helped somewhat to write again my feelings, but the heart is still aching. The loneliness will turn into loud noises once the family is back. I can once again put all of this behind me and save it for another day.
This morning I wrote a post that showed some sadness and some wonderful joy. I will never forget the joy, the sadness hopefully will pass for my caregiver. Tonight, only hours later, I want to share another story of what happened today. I wasn’t going to even say anything about it. Because it is something I don’t seem to be able to put to rest, but after just reading a blog from a poster, that I enjoy reading, I decided, what the heck, tell all, you always do! The blog I read, seemed to be speaking to me directly, at least that is the way I read it, and of course it wasn’t about me, not really. http://birdmartin.wordpress.com/2012/04/16/the-all-ellusive-happiness/ Please read this. It came from Bird. What it did for me was to push me to keep the strength, keep the faith, and keep going forward. I felt like this posting today. My brother woke up with the ghost look. No smiles, no tears, just clammy, and very sweaty and a pure white around his eyes. He did eat his breakfast. The caregiver did come give him his shower, and I have to take a quick moment here to thank her dearly for she is a wonderful caregiver. Her mate’s surgery that I thought was done yesterday was delayed until this morning very early. Yet she came here, because she knew my brother needed her. Bless her heart. So, she calls me into the bathroom, to show me red spots speckled through-
out his chest area and his back. I recognized these spots. Every time he has heart problems for some unknown reason unknown to doctors, this red rash appears. She gives him his shower, and gets him dressed. Immediately, he starts to sweat and grow paler. I place him in the car and we go to his local doctor, which is on the route to the hospital. I run in and explain what is happening, and they say they are booked. If it is an emergency, take him to the hospital. Alright, I have to accept this, even though my brother is sitting there bawling his eyes out. He doesn’t want to go to the hospital!! We move towards the hospital. I take him in. He is barely standing, so they place him in a wheel chair. The wait was very short in the waiting area, as they heard the word heart. He was immediately hooked up to the monitor, and the sticky notes were placed all over his body. Machines were hooked up, sounds of monitors were heard. An IV was inserted into his arm with much cussing being heard from his mouth. The nurse must have been very experienced with his kind, for she said nothing. Blood was drawn. I was so thankful that the caregiver had been paying attention and that I was observant. I just knew I was saving him from yet another disaster. I was so impressed with this hospital. What fast speed. So efficient! The nurse leaves the room stating the doctor will be right in. An hour goes by, no doctor, an hour and ten minutes goes by, he comes in. He tells my brother to raise his arms. Now I am going to push down on your arms, don’t let me push your arms down. With my naked eye, I can see that one arm is definitely much weaker. He stops the tests and says to me, Yep, he has equal strength in each arm, no heart attack here. My jaw dropped. Of course you and I all know he has Parkinson’s, with major tremors. I have not stated to you before that he had a TIA a year ago, a silent stroke, and two years ago he had a major seizure, that killed off many cells in the frontal part of his brain, helping Parkinson’s to enter his body at a much earlier time than it should have. I see him either hold his arm in a L shape when walking, or I see it dangling from his body, like it may be ready to fall off. So this doctor is telling me, Yep, he is equal on both sides. No heart attack. Now I have to say that when we lived in Florida, where his seizures and Parkinson’s began, it was a common procedure, that if I took my brother to the ER, there was a brain scan performed, along with blood work, an x-ray of the heart. Common procedures. Today, the doctor says no heart attack. Let’s run a CBC, complete blood work. I interrupted him and said they had drawn blood when we first entered the room, and the doctor says it is sitting out on his desk awaiting for approval from him to run certain tests. It will only take an hour to run. Now we had already been there for an hour and a half by now. He says let’s get a brain scan and a chest x-ray. He walked away without waiting for a response to me. I sat there wanting to bite my nails to chew on his words,but I don’t bite my nails. I heard my brother complaining about his bottom end burning from laying in the same position for so long, and he was trying to roll over, but being so weak, this is a major struggle for him, plus all the wires attached to him. No more thinking. I got up and went out to the nurse’s station and got his charge nurse. I took her aside, and said, if my brother were actually having a heart attack, we would not be sitting here now for almost one hour forty-five minutes. The doctor and you, charge nurse, would be in over time mode, correct? She looked at me and probably wasn’t used to hearing people be mouthy like me. I asked her, did he have a heart attack? She said no. I explained that we were already in treatment with seizures, that too many expensive scans were done to him and I wasn’t going to put him through this again and again. The x-ray, no to this also. I came in here to make sure he wasn’t having a heart attack. He isn’t. I want him to be released. She walked away, not saying a word. She brought in a form in about fifteen minutes, saying sign this, so we aren’t held liable if he dies. She takes the IV out, pulls the stickies and wires off. Helps him to get dressed. I am satisfied, he didn’t have a heart attack. I am satisfied that I didn’t give the insurance companies any more monies for routine orders. This was all from his Parkinson’s. There was a brief moment, I admit, that I panicked, when I heard the word death, but I HAVE to have FAITH in GOD. When I read Bird’s blog, it so reminded me of my faith that I had and have grown even more. I am guilty of not going to church too often. I do not like organized churches where I feel all they want is my money. I do feel God is with me every minute of my day. I have no doubt. I pray harder in my closet than I ever do when I attend church. If I don’t make it to heaven, because I didn’t know about this rule or that rule, I can at least know I tried very hard. I took very good care of my brother, I loved my children as best as I could. I gave to all who needed giving. I did my best.
